Hey folks -- as a friend so gently reminded me, it's been awhile since I posted an update so here goes!
Things are going OK for Amanda -- not great but better. She continues to have very slow improvements but we still have a long way to go. We saw the rheumy a couple of weeks ago - he was pleased with her response to the treatment and wants to go to every five weeks. I'm skeptical but willing to give it a try. Amanda continues to have significant pain in the week just prior to her next treatment.
We finally got an IEP (individual education plan) in place for gym. They physiotherapist from the Arthritis Society has given Amanda a series of exercises she can work on to work at to improve her strength and mobility. She does them during gym class if the class is participating in something she shouldn't be doing - running, jumping, etc. Amanda hates being separated from the class to do her exercises but her teacher is afraid she'll get run over if she does them in the gym during class.
Other than that, not much to report. Her eyes are still fairly clear - whether that's because she's doing well or she's responding well to Remicade, we don't know. And at this point, I don't care! She's doing well and that's all that matters!
And just a reminder that March is Juvenile Arthritis Month! Here at the University of Waterloo, I'll be doing our 8th Annual Two for Blue day - pay a twoonie, dress in blue, and support juvenile arthritis research. See if you can get some companies in your area involved!
Thanks for reading!
Michelle
2 comments:
Hi Michelle, My Name is Joanne. I have read up on your daughter's JRA. I have just made up a site for my son Jacob. It's interesting to hear another mom's view on the whole ordeal. You can see my post on www.jacobsuveitisandjrajourney.blogspot.com We have been very fortunate that he had four years of remission. But it's back bringing along it's friend uveitis! Thank's for sharing your experience.
Hi Michelle, You had posted on my site and said I could ask you questions about the injections because Amanda has had so much. Well here goes.. Have you ever had any issues with the injections? You can see what I mean on my posts. Jake is going in for a synovectomy next week. Have any of Amanda's joints ever had any excess tissue? Thanks for your help!
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